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    Cerebrospinal Fluid Research: Needs Assessment of School-Going Children and Adolescents With Spina Bifida

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    Dimple Goyal
    This study assessed the needs of 41 school-aged children and adolescents with spina bifida in Ireland. It found that over half experienced bladder incontinence and over 70% required assistance with bowel functions. Most children also required help with personal care tasks. While parents were generally satisfied with the specialized spina bifida clinic, 73% identified needs for additional services like home adaptations and counseling. Parents suggested improvements like more therapy, better communication, and better coordination of services across treatment sites. The study highlights significant needs within this population and a need for improved coordination of their care.

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    Cerebrospinal Fluid Research: Needs Assessment of School-Going Children and Adolescents With Spina Bifida

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    Dimple Goyal
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    This study assessed the needs of 41 school-aged children and adolescents with spina bifida in Ireland. It found that over half experienced bladder incontinence and over 70% required assistance with bowel functions. Most children also required help with personal care tasks. While parents were generally satisfied with the specialized spina bifida clinic, 73% identified needs for additional services like home adaptations and counseling. Parents suggested improvements like more therapy, better communication, and better coordination of services across treatment sites. The study highlights significant needs within this population and a need for improved coordination of their care.

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    1743-8454-1-S1-S44

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    This study assessed the needs of 41 school-aged children and adolescents with spina bifida in Ireland. It found that over half experienced bladder incontinence and over 70% required assistance with bowel functions. Most children also required help with personal care tasks. While parents were generally satisfied with the specialized spina bifida clinic, 73% identified needs for additional services like home adaptations and counseling. Parents suggested improvements like more therapy, better communication, and better coordination of services across treatment sites. The study highlights significant needs within this population and a need for improved coordination of their care.

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    11 views1 page

    Cerebrospinal Fluid Research: Needs Assessment of School-Going Children and Adolescents With Spina Bifida

    Uploaded by

    Dimple Goyal
    This study assessed the needs of 41 school-aged children and adolescents with spina bifida in Ireland. It found that over half experienced bladder incontinence and over 70% required assistance with bowel functions. Most children also required help with personal care tasks. While parents were generally satisfied with the specialized spina bifida clinic, 73% identified needs for additional services like home adaptations and counseling. Parents suggested improvements like more therapy, better communication, and better coordination of services across treatment sites. The study highlights significant needs within this population and a need for improved coordination of their care.

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    Cerebrospinal Fluid Research BioMed Central

    Oral Presentation Open Access


    Needs assessment of school-going children and adolescents with
    spina bifida
    M McGinn*, S Dockeray and O Hensey

    Address: Central Remedial Clinic, Clontarf, Dublin, Ireland


    Email: M McGinn* - murtaghmairead@hotmail.com
    * Corresponding author

    from 48th Annual Meeting of the Society for Research into Hydrocephalus and Spina Bifida
    Dublin, Ireland, 23–26 June 2004
    Published: 23 December 2004
    <supplement> <title> <p>48th Annual Meeting of the Society for Research into Hydrocephalus and Spina Bifida</p> </title> <note>Meeting abstracts</note> </supplement>

    Cerebrospinal Fluid Research 2004, 1(Suppl 1):S44 doi:10.1186/1743-8454-1-S1-S44


    This article is available from: http://www.cerebrospinalfluidresearch.com/content/1/S1/S44

    Background more therapy and improved communication within the


    The Central Remedial Clinic (CRC) is a national organisa- multidisciplinary team.
    tion providing a range of specialised services for children
    and adults with physical disability. One such service pro- Conclusions
    vided is a specialist spina bifida service. The aims of the We have highlighted a high level of need within this pop-
    study were: 1. To assess the current level of need among ulation. Whilst parents may be happy with the current
    school-going children and adolescents (aged 5–18 years) service provided, there is much room for improvement.
    with spina bifida. 2. To obtain a measure of patient and The key demand is improved coordination of services, not
    parental satisfaction with the specialist spina bifida serv- only among the services provided by the CRC, but among
    ice provided by the CRC. 3. To implement improvements all care-givers providing services on multiple sites in the
    in the service. Dublin area.

    Methods
    The parents of 42 children were invited to participate in
    the study. All lived in the Eastern Regional Health Author-
    ity and attended the specialist spina bifida service in the
    CRC. All but 1 agreed to participate. Each participated in
    a semi-structured interview, which included the comple-
    tion of a questionnaire.

    Results
    Of the 41 children, 22 were attending special schools and
    19 were in a mainstream setting. 34.1% were incontinent
    in relation to bowel function. 56.1% were incontinent in
    relation to bladder function. The majority required assist-
    ance for toileting: 73.2% were dependent in relation to
    bowel function and 53.7% in relation to bladder func-
    tion. A significant number were dependent in relation to
    personal care (61% for washing, 58.5% for dressing).
    Whilst there was a high satisfaction rating for the service
    provided by the CRC (92.7% generally happy), 30 fami-
    lies (73.2%) identified the need for additional services,
    particularly the need for home adaptation and counsel-
    ling for both the child and parents. Among the improve-
    ments suggested by parents were increased information,

    Page 1 of 1
    (page number not for citation purposes)

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